Scoliosis: Life, Support & Friends

I thought for my first blog I'd introduce myself and tell you a bit about my Scoliosis journey. So, my name's Kat and I'm currently 16 years old. I was diagnosed with Scoliosis in 2009 after a holiday to Florida where my Dad noticed my ribs were sticking out. My first appointment with my surgeon was 2 months later, where I was told I'd have to have surgery as my curve was already at 44 degrees and was too late for bracing. When I had surgery in January 2010, my curve had increased to 53 degrees. My surgery took 6 hours and I came out with an almost fully straight spine (3 degrees). My recovery was quite a speedy one, so when I finally went back to school I only missed an hour of it as I went home early. From having the surgery, I can tell you that having the surgery is really worth it! The pain decreases a lot after surgery. You may get a few bad days, but nowhere near as many bad days as you had before surgery. There are so many reasons why having the surgery is wo...

Reported in The Daily Telegraph of 20th May 2010: Two sisters with a rare curvature of the spine have both undergone life-threatening surgery to straighten their backs. Lucy Dover, 14, and her sister Naomi, 11, both had titanium screws and rods inserted into their backs in operations lasting almost six hours each at Freeman's Hospital in Newcastle. Their mother Sarah Dover, 41, a data analyst from South Shields, Tyne and Wear, spent 16 days in hospital praying that the operations would prove a success. Naomi underwent surgery on March 31 and her sister's operation was due to take place the next day but was delayed to April 7. When Lucy woke up groggy from the anaesthetic, her sister was there by her bedside to give her a hug. Naomi said: "We both chose to have the operation at the same time - we thought we could keep each other company in hospital. "It was scary going for the operation and having my sister there really helped me get through it. I feel muc...

Dammit, I promised myself I wouldn't cry. Mom and I drove to Tulsa and flew to St. Louis. Completely uneventful. Up early the next morning, called the shuttle to the hospital so we wouldn't have to worry about parking and grabbed breakfast in the cafeteria. Let me tell you something. Barnes Jewish is the biggest hospital I've ever seen. No joke, the building I was in is 20 stories high and all of the buildings cover SEVEN CITY BLOCKS. This place was GINORMOUS. I got two new x-rays taken. Oh, I forgot to mention, I was in excruciating pain THE ENTIRE TRIP. So I couldn't stand up straight (especially without my shoes) during the x-rays. I didn't bother to tell the radiologists or Dr. STL, I don't really know why. I was amazed to see the x-ray up on the lightboard. My bones are so off center when I am in pain. It was a good thing I stood like that, though. None of my previous x-rays had shown that my L4 vertebra is a good 1-1.5 cm to the left of my L3 ...

The Cobra coverage was cheaper than I thought, and my mom said she'll help pay for it. We decided it's worth it to see what Dr. STL has to say, so we're flying up there on Tuesday. My appointment is Wednesday, we're flying back Thursday. If we could stay longer, we would, but it would cost extra to change our tickets. Ugh, the whole quick trip idea was so I wouldn't miss work. I wish I could see my relatives while I'm there. Anyway, I'll post when I get home, probably Friday. I really have no idea what to expect, or even what to hope for. I think I can stop praying for flexibility and symmetry. I think the most realistic thing to hope for is pain relief, and the rest is just icing. I'm pretty pissed off, actually. Why is this happening to me? My x-rays don't look so bad, compared to some others I've seen online. Why am I in so much pain? I look fine from the outside, except for my limp and rib hump. Life sucks sometimes.

Sorry I haven't posted in a while. Not much to talk about. I've been loving the Flexeril, although I've never had dry mouth this strong before. I got new electrodes for my TENS unit, but haven't had to use them yet. I've had quite a bit of free time on my hands - I lost my job. The pain seems to all but disappear when I don't have to work! I doubt I'll be able to afford Cobra coverage, but I'm gonna try my best to find the money somehow. Otherwise I have no way to take care of myself until I get a new job with insurance. The surgery is off. I found out today it's way more expensive than my mom or I had imagined. Six figures. I doubt that even includes the hospital stay, rehab, plus all the assorted "little" fees, like medication and the staff's fees - radiologists, ahoy! I have no idea what the doctor would even do, so I kinda resent the lady there telling me that. It really took the wind out of my sails. Her saying that killed the onl...

I've been thinking about how to introduce myself to you all a lot over the past few days. I suppose I'm overthinking things. I don't have to tell you all my entire life story in one post, and my current pain level doesn't allow me to type that long, anyway. Let me start off with this, then. I had spinal fusion surgery from T10 to L3 in July 1996. I only got health insurance a year ago, so I just decided last summer to get a doctor and have a checkup and a new set of x-rays. (It had been 10 years.) Long story short, I'm having another surgery next month. It's been twelve years since my first surgery, so my memories are a little fuzzy now. I was under the impression that the first surgery would cure my scoliosis, end my pain, and not limit my activities at all. I only realized the other day when reading Simone's story that this has happened to others. I'm not quite sure if my first surgeon actually told me this, or if I just assumed it and no one ever told...

Health Central published this story about a procedure that is helping children under the age of 5 to reverse their scoliosis! Ivanhoe Broadcast News Tuesday, December 30, 2008; 12:00 AM (Ivanhoe Newswire) -- A new procedure is stopping and reversing scoliosis in children -- without a brace. Doctors at Morgan Stanley Children's Hospital of New York-Presbyterian are using a novel procedure called spinal stapling to treat scoliosis in children under 5. The procedure is not only stopping progression of the condition, but reversing it. Until now, no treatment existed to straighten the spine of children with scoliosis. "For the first time, we have a way to potentially reverse the scoliosis," Michael Vitale, M.D., chief of pediatric spine and scoliosis surgery at Morgan Stanley Children's Hospital of New York-Presbyterian, was quoted as saying. Spinal stapling is a two-hour, minimally invasive procedure during which doctors implant staples across the growth plates of the sp...

We have been discussing this on the group and many patients have strong views about their scoliosis and the pain they are getting, especially when they go to see a Dr and he says, quite casually "scoliosis doesn't cause pain!". So, let's get to the bottom of this debate. The answer to the question in discussion is rather complicated, because it depends upon the amount of curvature of the spine and the amount of other degenerative changes, like arthritis, in certain parts of the spine. In general, most forms of scoliosis are not specifically painful. It is common amongst Drs to believe that patients with curves that are less than 30 degrees should not have any more back pain in their life than someone who has a normal straight spine. However, scoliosis does affect the whole body and larger curves over 30 degrees can cause significant changes in posture that can make it painful for the scoliosis patient to sit, stand or walk. Larger Scoliosis curves can have an effect o...

I am back from my holidays, we went to Doñana National Park camping with my husband's brother and his wife in our lovely Quechua tent. Before we left we bought 2 camp beds, we usually sleep on a double blow up mattress but our family needed something to sleep on and I am not all that happy with sleeping on the floor, I struggle to get up in the morning. You should have seen what we managed to ram into an Audi A6 for 4 people to go camping together - hilarious, I swear that the boot gets larger when I show it "stuff" that I need to get into it! HEHEHE. The photo does not do it justice to be honest, not everything was in the car at this point, we still had a table out because we were cooking breakfast on it, so the last things to go in were the cool boxes, food, camping grill, backpack with all knives/forks etc in it, not forgetting 4 rather fatter adults to when we arrived! LOL I had an appointment today to see a new spinal surgeon in Marbella called Dr Ayllon. My 2 year ...

Well, well, well. I have just read in the mail that Gillian McKeith has Scoliosis and has been suffering from this for some time. "Every day of my life I suffer from a condition called scoliosis, a severe abnormal sideways curvature of the spine. It bends in the wrong directions - 'S' shape in my case - and strikes violent spasms of breathtaking agony throughout the body. My back is the way it is because no one spotted it as a child and sent me for treatment. Doctors have told me it's now too late and too severe for even an operation to help. So while I help millions of people around the world to get well with good food and lifestyle changes, I understand what it feels like to endure serious health challenges." Who would have thought it eh, the lady who tells us what to eat, how, when and why is struggling with Scoliosis, I hope she is using the herbs for her pain and practicing what she is preaching! The paper has suggested that there is nothing they can do for h...

I have noticed just recently that I seem to be leaning left again and walking is becoming a real struggle, I only noticed this the other day when I had my jeans on and I saw myself in the mirror (not something I do very often especially as it is cold). I was shocked, my right side is fairly straight and flat (not too much flab) - my left side is almost folded in half and I can wedge my hand in between the fold that appears there - I look awful!!!!! Is it even possible for me to start curving again and my Scoliosis show signs again after a Harrington rod surgery 19 years ago? I never used to be conscious over my body years ago and I know it changes the older I get but I am no bigger than I was when I got married at age 24 and I am now 31, I hate my clothes I do not feel comfortable at all and I hate it when people look at me when I am walking down the street in a sideways crab walk!! I have even added a picture of my back, I never thought I would share that with the world because I am ...